I am Emma

“What is your name?” someone might ask. It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward. Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth. I call these utterances my “mouth words.” They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not. My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many. Mouth words are witty accomplices to a mind that speaks a different language entirely. There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist. I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier. I have come to understand that my mind is not like most people’s.

I am Autistic.

Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings. My hearing is excellent. Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn. I am compelled to imitate each one I hear. Car horns I can respond to cheerfully. It’s the same with light. The harshness coupled with bloated heavy air is so intense I become overwhelmed. I wonder if I am too aware of my surroundings.

Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship. I feel people’s intentions and feelings so intensely it can be difficult to concentrate. I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears. Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness. There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions. It is during these moments that I flounder because society expects less of me and not more. I listen to the words spoken by people who are crying or shouting. They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists, but their words are in direct conflict with their actions.

Others believe that I do not have feelings at all. How do you defend yourself against such accusations? Trying to convince those who believe I’m an empty shell is impossible. Adding to this is my inability to use spoken language as expected. “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.

If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin. “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me. Hearing my voice keeps the dark, piercing void of nothingness from engulfing me. Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress. A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.

Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself. I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings. This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me. It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me. When my mind is caught in a downward spiral I need calm reassurance. My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing. My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains. Only the dedicated few talk of love during my episodes of furious stress and suffering. Their love is rejuvenate and restores my faith in this awkward world.

I am exuberant, overflowing with energy and love music. I’d rather gallop than walk, bounce than sit quietly. I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand. I want people to hear me. I am as versed in making silly faces as I am in my favorite songs and my neurology. My mind is lightening fast, hungry, logical. I’m a seeker, determined, a lover of laughter in a body trying to keep up. It can’t, but I’ll keep trying.

Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear. Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility. I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.

156 responses to “I am Emma”

“Others believe that I do not have feelings at all. How do you defend yourself against such accusations? Trying to convince those who believe I’m an empty shell is impossible. Adding to this is my inability to use spoken language as expected. “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.”

I hate that you have to defend yourself at all, ever, about anything. I realize even as I write this that to NOT have to defend yourself is to be in a place of privilege. To speak is to have privilege. To be able to type independent of support, to be able to remain focussed and not need quiet reminders to keep going, is to have privilege. Those who demand proof of you, are in a place of such privilege and yet have no empathy, compassion or even a modicum of understanding of that fact.

so beautifully written dear Emma–I daresay you are brillian, and you give me such dimension and depth of understanding of my daughter and sont! And your Mom, well, she inspires me to always do better for my beloved Littles everytime I read her words. Thank you both.

This essay began as an english assignment in her English Composition class. The students were asked to write a “personal narrative” dealing with a conflict that they experience in their lives. Emma spent many, many hours on this. (She received an A!) This is the class I mentioned to you, Mom. They skipped her a grade ahead and she is flourishing. The students and teacher are the antithesis of what she has experienced in a “school” setting. It has been an incredible (and exciting) experience witnessing the difference of a “regular” school with little to no prior knowledge of “autism” and the segregated “autism” schools she was subjected to in the past.

I am the mother of two autistic girls. Emma made me cry a little. That’s a lie… she made me cry a lot. I could see my girls in everything she said. I could recognize my girls in her every line and in her every word. I have no words to thank her. She is a beautiful, unicque person, she has nothing to apologize or explain herself for other than how wonderful she is! Would it be okay if I translated this in Greek so that everyone in my country could read?

I’d have to echo the Wow. More erudite words pass through my mind, but the stark reality is that I’m humbled to hear your poetic and personal message. It harkens back to answering a time old rhetorical phrase, “what’s in a name?” Yet you’ve shown a light and peeled back some layers exposing personal and political imagery providing a detailed cacophony of sound and experience. Thanks for sharing your world and talents. I’m off to share your words with my son.

Reblogged this on Author P.S. Bartlett and commented:
If you’re looking for a #BEWOW Wednesday, you couldn’t possibly be any more wowed than you could be by reading what Emma has to say. So beautiful. So genuine. So perfect.

Dear Emma,
Thank you for sharing this thoughtful and illuminating essay. As always, I am moved by your creative use of language, your deep intelligence, and your unabashed wit. Your writings teach me that my assumptions about other people are narrow and usually wrong.

During the recent brouhaha about people who type for communication I realized that those of us who rely only on verbal language seem incapable of recognizing a simple fact: it is our brains that are limited, not the typists. We cannot grasp that people who seem so different than us are actually much smarter and have more resourceful minds.

Thank you for sharing your journey with me. You have taught me to be more open-minded and reminded me of the value of kindness and forgiveness.

I have always loved words, loved language, and loved communication in any form. From you, though, I am beginning to understand the dichotomy between words used to connect us and words used to separate us. If I say I am feeling sad, that might mean one thing to you and another to me. I might just be feeling a little blue because I miss my dear, sweet dad who left this world so many years ago, but still kind of bittersweet because I got to be his daughter for so many years. You might read *sad* and even read why I am sad, but feel that sadness so much more sharply than I do because you might have experienced a much more recent or acute loss. So, while our words connect us in our sadness, they also separate us in the deepest meaning. One could say that a better way might be to be together in the same space, each of us feeling our own and the other’s sadness without words.

This is a huge subject, including cultural norms, nonverbal communication and different language translations. I just wanted to tell you that as a person who loves words and loves communication even more, I am intrigued, fascinated by your words, and much more, by your ability to navigate and communicate between the world of words and the world of personal feeling and experience.

Thank you for working so hard to help us understand you, because with that understanding, might come the ability to understand all of humanity.

“Mouth words are witty accomplices to a mind that speaks a different language entirely. There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist. I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier. I have come to understand that my mind is not like most people’s.”

If only I could see through your eyes, hear with your ears, feel with your heart. I cannot begin to imagine the richness and intensity of your perceptual experience. Your typed words conjure up a wondrous world and the unfettered joy of watching you dance and gallop and sing conveys even more. You are bliss, Emma. And I am so lucky to be a daily witness to your extraordinary life.

Emma, all the posts I have read on this blog have helped me to understand and connect with my children, three of whom are autistic. They are, of course, all very different, but they all experience communication in profoundly different ways.

I hope I have always presumed competence in the face of non-verbal people (and by non-verbal I mean anyone who finds spoken language a trial for whatever reason) but to hear your explanations and those of Ariane have always given me so much more than they are able to explain.

I know my children experience all sensations and emotions in a suffocating blanket at times, and that they are as far from emotionally sterile as it is possible to be. I have used you as an example in the past to prove my point, and I will continue to do so as you are such an important and articulate voice in the autistic community. You need to be heard.

“There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions. It is during these moments that I flounder because society expects less of me and not more. I listen to the words spoken by people who are crying or shouting. They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists, but their words are in direct conflict with their actions.”

Yes! Highly empathic people can spend years of their lives in deep confusion (even pain) because most people are trained to hide their feelings, feel ashamed of them, or outright lie about them. People’s bodies and mouths don’t agree with each other at all sometimes, when emotions are strong. Know that you’re not alone in floundering, or in having an unimaginable abundance of empathy.

Karla, I believe one learns to mask their emotions and only say out the complete opposite of what they feel because they have come to believe that no one really cares for how they feel. Now people tend to listen and not see, even with a flutter in my voice when I say am fine, one won’t take off a second to bother asking if I am really. people are more self centered and the weak ones at heart would rather drown in their own sorrow than be subjected to judgmental minds

dear arianne and richard, it’s wonderful to hear form you – and emma – after such a long time. thanks for keeping us on your list. there are so many things that can make us feel marginalized – and you are doing so much in this endeavor. both ezra and i have had health challenges – not life threatening – just (in some cases) genetic, in some cases, induced following surgery – so we are now in your ‘posse’, of recognizing what often flies under the radar of what seeks healing – love and gratitude to you three – (and your son, whose name eludes me) – elizabeth and ezra

So nice to hear from you! I enjoyed reading your newsletter yesterday, it was very helpful. Sorry to hear that you are having all these health challenges, I hope things improve. I hope we see you next time you come to NYC, we always get so much out of your talks. Our son is Nic, and he’s an awesome 15 year old. Lots of love to you and Ezra.

Thank you for your insight Emma, your shared thoughts are a true example of how someone on the spectrum can overcome their difficulties to express what they want through written word. My son who is 7 is going through a transitional period that as his speech is improving his emotions are becoming stronger and finds it difficult to understand these and express these proportionally so ends up in either expressive anger, tears, humming due to over stimulation or a complete and utter meltdown due to his current inability to express his emotive state and needs.
I am so glad there are so many people who process life differently like those with autism speaking out as it gives me hope that Isaac can one day live life in his world being accepted by those who are deemed as neurotypical. If more people in life saw what I have seen through my son’s eyes then the world would be such a better place. Thank you Emma 🙂

emmazurcherlong posted: ""What is your name?" someone might ask. It's a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward. Instead, "you many not spit," or "Rosie's not here!" are examples of seemingly random nons"

Reblogged this on Teachezwell Blog and commented:
“I am Autistic.” Emma shares her perspective on the overwhelming impact of environmental stimuli. It’s an account worth reading, whether you are a parent or teacher of someone with autism, or have been diagnosed with autism yourself. Please consider supporting the documentary on Emma. You’ll find links at her site.

Beautiful words Emma! I have a question about a respectful response for you or your mother to answer If you find the time to do so.
I work with a boy who is non verbal, we use an iPad app, white board with written choices, and a laminated qwerty board to communicate. Recently we’ve been trying to encourage more use with his iPad app… Many times during the day he presses the word “stop”-times like when we’re at the pantry when I’m asking him what he wants to eat or when asking him if he wants to go play outside… I asked with the choice board if he was stuck on the word stop or if he was asking me to stop doing what I was doing. He chose that he was asking me to stop.
I get why it would be annoying that his mother and I are constantly asking him to work by having him communicate instead of just opening the pantry and letting him get whatever he wants but what kind of respectful response can I give himself he says “stop”? I explained to him that his words are important and that I want to know what he wants during these times I ask and that what he wants is important!
So….any advice?

It’s a tough balancing act to encourage written words, but not push so much that the person resists and rebels. We have specific times (and use a timer) that are designated as “typing sessions”. I usually set the timer for no more than 45 minutes, but in the beginning, five or ten minutes was all that E. could tolerate and only a few times a day. We are specific in what the session is covering. So for example, this essay, which was an english composition assignment for her class, took more than six 45 minute sessions. Typing is very very hard for her. E. has explained that she does not think in words, so she must translate the way she thinks into words first and then spell out the words she uses. She has told us that this is an exhausting process and I can only imagine.
For “do you want” questions or yes or no questions, getting a laminated card with yes or no on it and having her point to one of two choices can be helpful, though I found not always accurate, but certainly more accurate than the spoken response.
I hope this has been helpful.

If it’s okay with you and if you’d like me to, I can ask some of my non-speaking Autistic friends for their thoughts and get back to you with more.

Thank you for your response, it is really tough to help him build his communication but also not push him too hard. Your advice is helpful and I would totally love to hear from your friends on what they think!

wow, okay I got it. Reality check….
I guess I could have painted a better picture of why he must ask for something before the pantry is unlocked and opened, hes on a separate diet than the rest of the family and the pantry includes foods that he may not have. When given free access to the cupboard snack bags are torn open hastily,chips fly across the kitchen, whole jars of cookies are decimated and so on….
But after reading your advice and taking it in I realize that with this specific pantry situation the pantry is locked for the convenience of others and not for his benefit (besides the diet restriction and intake control)… I think that maybe I can talk it over with the family about considering spending more time in helping him learn to slow down at the cupboard and gain control over himself and explain more to him about what he can and cant eat from the cupboard so that he can have more independence in getting and preparing his own food.
Thank you for this advice, I have never meant any disrespect to him but your words have spoken to me in a way that shows me that I myself need to slow down and stop trying to push for where i think he needs to be or whati think he needs to do and listen more carefully to what hes really telling me.

I asked a number of my friends for their suggestions and they uniformly said some version of – if they say “stop” then STOP, whatever the reason.

If someone, anyone says “stop” or “no” we respect that person’s demand. This is what we teach our children, this is what we are taught, and yet when it comes to Autistic kids and people, somehow they get separated out and THAT is a huge problem. What good is language acquisition if what is said is not listened to and respected?
Thank you so much for commenting. I have been reflecting on my own ideas about language and what that should or should not mean, particularly when language is not easy or natural, but instead very, very difficult for many.

So, oftentimes, the ability to DO what we need to do for ourselves, and the ability to deal with being forced to communicate about it, or forced to use words about it, are mutually exclusive.

Think about this–how would you feel if every time you went to do something that you were perfectly capable of DOING for yourself, like….getting a snack…someone was at your side forcing you to tell them what you wanted instead?

Would you find that invasive, obstructive, infantilizing?

Would you tell the person doing it to knock it off? Eventually you would, right? Your ability to self-regulate, to self-accommodate, to meet your own needs, isn’t held hostage to your always talking about it on demand, is it?

Why should his be?

(This is a long way of saying that the respectful response to his asking you to stop, is to stop.)

Yes, it’s annoying–and invasive, infantilizing, obstructive, and crazymaking–for someone to ALWAYS be demanding that you work by communicating in words about things that you can do for yourself without communicating in words. My suggestion is that you stop it.

Hi Emma! This is awesome! Thank you for sharing! I have a ten year old beautiful son that I adore and hearing some of your feelings and your coping with them help me to better understand. Thank you for sharing, it is truly a gift for those of us who love someone with autism!

It all means something doesn’t it. The words are never meaningless, though they may sound random or just repetitive to the listener. Emma I am slowly learning. L would ask every morning and afternoon “is R….. Sick today” or R…. Are you sick today? Say yes or no.” I am ashamed that it took me months to possibly figuring out what he really meant. I would become upset at him for continuing to ask this day after day.toI waswrapped up in my own grief and pain to recognise his own and his need for reassurance. L.. Was continually plaing on an App on his ipad that told you what to do in an emergency, who to phone and what to say on the phone. He would constantly repeat the script for how to ask for an ambulance. Then finally one day it dawned on me. He was frightened for his little sister R… Maybe scared she was going back in to hospital. She had a stroke 2 years ago and went to hospital in an ambulance. She has been in hospital several times. He was asking the only way he knew how, the only way the words would form if his sister was okay and that he was worried and needed reassurance. He has had close family die.he was even practicing what got do if it happened again. So it all communication. And if you know the language it makes perfect sense. Thank you for reminding me of that Emma.

Reblogged this on St Georgia & boo and commented:
I am a mother, two of my children are divinely built this way, like Emma. The intrinsic details of the way they move and see the world, continue to be a wonderful enigma to me everyday, and it makes me realise how much i would give to see the world through the colours of their lens and feel the world around me through their skin. I am a lover of Autism and an Advocate for humanity, thank you Emma.

Your hard won words are what educate the rest of us Emma, thank you for what I know is an immense effort. You are so eloquent , a beautiful writer changing the way the world understands autism – Bravo!

Thank you for sharing this beautiful part of you, Emma. Your words provided such depth and painted a wonderful picture of the lovely girl you are. You are a brave and courageous soul, and I so appreciate the insight to your world.

I have never heard anyone else describe my way of thinking. No words or often even images. It’s a language made of things that don’t exist in this world, like a crayon thrown in with all the usual colors but turns out to be a color the world doesn’t know.

Thank you for writing this…I have 2 sons with autism, one nonverbal. I am always amazed a the labels assigned… no theory of mind, no empathy… then I watch supposed NT people and think, “why aren’t they labelled too.” Thank you for so wonderfully sharing your thoughts and experience… it helps give me additional insight into my boys lives and hopefully creates some understanding among those who don’t understand what autism really is. You are a brilliant person!!!

It’s so nice to meet you! I read your blog post with amazement and, this might sound crazy, but I thought: I want to know what it is to be autistic. I’m interested in neurology and everything that is out of the norm (normal is so boring and uninteresting and so snobby). The way you describe autism, reminds me of synaesthesia. Maybe you are a synaesthete as well?
Yes, I believe people would be much more happier if they lived in high-resolution. I’m certain it can be overwhelming, but it would oblige us to just stop and enjoy. We need that urgently.
I’ll share this post wherever I can, people need to know that autism isn’t something bad, but so vivid! People need to know you! You’re inspiring girl. Keep me posted. 😉

Emma, thank you so much for this. My youngest son is on the autism spectrum — on the end of it where nobody would guess he’s autistic, just odd because he doesn’t seem to get social rules, and routinely behaves in ways others experience as strange. I’ve suspected for a long time that he experiences the world more deeply than others, and that he has to spend a lot of energy dealing with that. I’ve wondered whether perhaps this has taken the energy he would otherwise have spent figuring out the rules for getting along in the world, and that sometimes his behavior is the best way he can deal with reality in the moment. I see a thread of just that in your post, and I am happy to see it, as it strengthens my theory about my son. Thank you!

It’s a rare occurrence for me to read all the way through a post that I find by pure chance. This, however, left me breathless. As a musician, I’m incredibly jealous of the way you’re able to experience music.

I can relate, a little bit. I have been living with aspergers ( at least that’s the term, they call it) I’m thirty, as a kid and growing up through highschool, and afterwards, has been weird at times, and extremely stressful. i knew i had something that has made my life strange to most people, just wasn’t sure what it was till about two years ago. Now I have 1 nephew with autism and one with very mild autism. So reading this, is insightful as to how better to understand them. Thank you! Makes sense now. Alot of stuff makes more sense for me now.